Fetal
Care Research Foundation inaugurated a support group
for children affected with an inborn error of metabolism
called Mucopolysaccharidoses on 8th August 2003.
The support group also caters to children suffering
from other Lysosomal Storage Disorders (LSDs) such
as Gaucher, Pompe and Fabry diseases for which Enzyme
Replacement Therapy is now available.

Benefits of becoming a member of the Support
Group

1. Better understanding of
the disorders by the family members.

2. Confirmation of diagnosis free of
cost.

3. Cost free or
subsidized comprehensive health care by a team of specialists
like geneticist, pediatrician, orthopedic surgeon, ophthalmologist,
ENT specialist, cardiologist, pulmonologist, physiotherapist,
speech therapist, dentist, psychologist and social worker
to get over the physical and mental sufferings experienced
by these children and the family members from time to
time.

4. Creating awareness
about these disorders in their environment such as school,
neighbourhood and relatives so that they are accepted
with more compassionate feelings.

5. Creating special employment giving
due considerations to the physical disabilities of the affected.

6. Easy approach
for financial assistance from both the Government and
Corporate bodies to build a corpus fund / or provide medical
insurance to cover the frequent medical expenses of the
affected.

7. Prenatal diagnosis of the subsequent
pregnancies to rule out the disorder and thereby assuring
the family of a normal child.

8. Emotional support to the affected
families by bringing them to gether, and enabling interactions
among themselves.

9. Easy access to
communication with other support groups for MPS around
the world to keep abreast with the recent advancements
in the treatment and care such as ERT & advanced surgical
care etc., and avail the maximum benefits.

The incidence of MPS disorders is not known
in Indian population. Considering the size of our population,
many cases might have been missed due to the difficulties in
identifying the problems and confirmation of diagnosis. MPS
Support Group hopes to pick up the maximum number of cases possible
and be of help to the affected. Supportive care would indeed
make a difference in the life of the affected and help them
live their lives and not let the disease overshadow their existence.